This statement descibes how patient data is used and stored for those patients included in the ‘South London Registry of Cardiovascular Diseases’ (SoLoR-CVD) (previously the ‘King’s College London Cardiovascular Disease Registry’)*.
SoLoR-CVD is a retrospective registry of approximately 150,000 individual patients assessed and treated for cardiovascar disease at two large south London teaching hospitals between 2012-2022. This registry aims to provide important and novel insights into risk-factors, diagnosis and contemporary treatment of cardiovascular diseases in a large, urban population, that is socially and ethnically diverse.
Due to the size and retrospective nature of the registry, it was not felt that it would be possible to ask individual patients to provide written consent to the registry team so that we could access and share identifiable information. Following review by the confidentiality advisory group (CAG), we received approval from the Health Research Authority to proceed in accordance with section 251 of the NHS Act (2006). You may wish to be excluded from this registry and this can be achieved by contacting the registry team directly, or through the ‘National Data Opt-Out’ scheme.
The registry is being sponsored by King’s College Hospital NHS Foundation Trust in London. Information for the registry will be drawn from medical records at King’s College Hospital NHS Foundation Trust (KCH) and Guy’s and St Thomas’ NHS Foundation Trust (GStT). KCH will be the ‘data controller’ – your data will be stored at KCH and they are responsible for looking after your data, and ensuring it is used properly. KCH will keep identifiable information about you for 10 years.
When we extract information from the health records at KCH & GStT, we minimise potentially identifiable data – names and patient identification numbers (e.g., hospital ID and NHS number) are removed from the database, and participants are issued with a registry specific ID. Birth dates are recorded as month and year only, and post code is limited to ‘sector level’ i.e., SE27 5. This provides adequate data for research, whilst minimalising risk of reidentification.
We will maintain a password-protected file that links your NHS number and full date of birth to the registry specific ID. This linkage file will be stored separately from the research database, in a dedicated encrypted drived within the NHS firewall in KCH. We will share this ‘linkage’ file with NHS England (NHSE) when we request information from them about about your health. NHSE collect data from hospitals within England and Wales on all hospital admissions, and provide important information on survival. This linkage file will be shared with NHSE to enable us to accurately link to NHSE data. The data transferred back to KCH will be identified by your registry specific ID only, and integrated into the research database. Data transfer will be using a secure, encrypted procedure. We will use this information to enrich our research database and support projects including but not limited to those assessing the effectiveness of current risk prediction tools for cardiovascular disease, currently avaialble therapies, and to derive novel tools for risk prediction.
The research database will include de-identified or weakened identifiable data only. Managament and maintenance of the research database will be conducted by the SoLoR-CVD team, led by Dr Nilesh Pareek. Use of the research database will be overseen by a committee of experienced doctors and clinical researchers from KCH and GStT, in addition to public and patient representatives. Researchers will be able to apply to the oversight committee to access datasets to address their specific research question. Only researchers contracted to KCH, with either substantive or honorary contract will be able to request datasets. Many clinical researchers at KCH and GStT are substantively employed by our partner university, King’s College London (KCL.) Any researcher substantively employed by KCL or GStT will require an honorary contract with KCH if they wish to request SoLoR-CVD data. Researchers will receive minimally required dataset to address their research question.
Researchers may collaborate with external bodies, including oher NHS hospitals, universiities, or commercial companies in order to access specific expertise. Data will only be shared with external collaborators following review and approval from the data-security team and Caldicott Guardian’s office at KCH.
Your information will only be used for the purpose of health and care research. You will never be contacted by a member of the registry team. Data will be shared externally in the form of research reports, presenatations at scientific meetings, and in publication in peer-reviewed scientific journals.
Registry Team Contact details
If you have any further questions, you can contact the team on:
E-mail: kch-tr.ResearchNurses@nhs.net
Tel: 0203 299 1285
If you have previously requested that your data is not used for the purposes of research via your GP and the NHS Data-opt out scheme, you will be withdrawn from the database and no further request is required.
This registry has been funded by a grant from the ‘William-Frederick-Haines Trust’, administered by the King’s College Cardiac Research Group.
*The name of the registry was changed from ‘King’s College London Cardiovascular Diseases Registry’ to the ‘South London Registry of Cardiovascular Diseases’ in Spring 2025 to remove the impression that KCL was directly involved. Whilst reserachers involved may hold an honorary or substantive affiliation with KCL, KCL as a legal entity is not involved either as a data prcessor or controller.
SoLoR-CVD 